Around 1 in 35 people suffer from scoliosis. You are likely to know someone who has it. It’s a remarkably common but little talked about disease. Although it can occur at any age it is most prevalent between the ages of 10 and 15 when a growth spurt occurs. The majority of sufferers being teenage (probably body conscious) girls who are not likely to want to expose their condition.
Scoliosis is a cruel, progressive disease with no cure. Considering it’s reach and impact on society there is very little awareness with research disturbingly underfunded. There are currently no registered clinical trails. That means there is no route to improve the outcome for huge numbers of sufferers. In my experience it is dismissed as an insurmountable problem with all routes leading to an horrendous surgery. Few are interested in the challenge of taking it on.
Scoliosis presents as a 3 dimensional curve of the spine. Around 8 in 10 cases are diagnosed as idiopathic which simply means the cause is unknown – a situation I find shocking. It’s progression cannot usually be prevented (by standard treatments available in the UK). It’s not a condition that occurs through carrying a heavy bag or excessive exercise. It is a condition with route cause – in most cases unidentified.
Here in the UK, sufferers wanting to try conservative and non-invasive methods of managing their condition are not supported. GP’s and consultants and even Scoliosis Association UK will only officially advise on evidence based treatments as they are restricted by the NHS Information Standard. I believe this hinders research and innovation.
A large and very passionate community are left to trial and error, sharing experiences amongst themselves. This can lead to some fabulous outcomes and also a lot of confusion and miss-direction. What works for one group may not for another. People can be left devastated having invested time, emotion and money into a treatment protocol that doesn’t work for them. Each individual has a unique scoliosis with it’s own root cause. I believe each needs their own bespoke care and management programme.
My personal view is that surgery should be the absolute last resort – not the miracle fix. I appreciate there are circumstances where surgery is absolutely the right decision. However, the human body is a powerful resource that when aided by the right environment, has opportunity to heal itself. Motion is key to healthy joints. Inserting foreign objects into the body and fusing the spine rigid cannot be a good thing. All conservative and holistic methods of managing and even possibly correcting scoliosis should be pursued before surgery is considered.This simply is not available in the UK.
What is scoliosis?
A three-dimensional curve of the spine.
There are varying degrees of scoliosis. Mild conditions can go noticed for a persons lifetime whilst aggressive conditions can become life threatening. It can present itself as a single sideways curve of either the thoracic or lumbar (upper or lower) spine, or a combination of both. It may also have a vertical rotation that adds a twist.
Known influencing factors include:
- Neuromuscular; nerves and muscles.
- Genetics; hereditary – presenting or not in the parent.
- Syndromic; known conditions that present it.
- Congenital; developing abnormality in the womb.
- Long term damage; degeneration.
- Recognising the symptoms
- GP assessment
- MRI scan (magnetic resonance imaging)
- CT scan (computerised tomography)
- Observation: Monitoring the impact on internal organs until the curve reaches around 50% cob
- Casting: A permanent external brace used to guide the growth of the spine. This is only removed for remodelling.
- Bracing: An external brace like a plastic corset worn 23 hours a day. Cannot correct a curve but may possibly prevent it worsening.
- Surgery: Metal rods fused to the length of the spine. Younger children, yet to finish growing have growing rods with repeated surgeries to lengthen the rods as they grow. Once they have finished growing they graduate to spinal fusion where a bone graft is used to fuse the spine solid.
Around 8 in 10 cases are diagnosed as idiopathic which simply means the cause is unknown. Suffers are left with no support in finding a route cause to have any hope of addressing or gaining closure on if it cannot be addressed – a situation I find shocking.
It’s progression cannot usually be prevented (by standard treatments available in the UK).
It’s not a condition that occurs through carrying a heavy bag or excessive exercise. It is a condition with route cause – in most cases unidentified.
Here in the UK we used have screening in schools for early intervention. The condition hasn’t gone away but the screening has! I want it re-instated.
Today it is largely up to parents to recognise the symptoms in their child and take them to a GP for assessment. This involves a simple observation which may result in a referral for x-ray and/or scans. Note however that a clinical examination to measure scoliosis can be completed without exposure to radiation. The fact that there is so little awareness of the condition often results in parents distress over not recognising the condition earlier and GP’s not addressing it swiftly. This can result in delayed treatment and impact on management of the condition.
The UK has four methods of treating scoliosis. The experience of many sufferers however, is that surgery is seen as inevitable. There is little evidence that bracing works, so they are merely observed until their curve impacts their health and mobility before being given the option of surgery. If your set against surgery this is a one track road with very little hope.
Complications of the condition:
- Self esteem; sufferers frequently experience emotional challenges resulting from the physical deformity endured.
- Lung and heart problems; the ribcage can impact on internal organs
- Compressed nerves; bones can sometimes compress nerves resulting in numbness, pain or control of some bodily function.
Complications of surgery:
- Reaction to anaesthesia and other drugs
- Bleeding, infection, clots
- Nerve damage
- Scar tissue build up
- Movement or detachment of implant